You Can Enable Research by Donating Tissue
The first steps of research in any type of cancer are done in a lab. Some of the basic materials scientists need for their research can only be created from human tumor tissue. Lack of fibrolamellar tumor tissue poses a major challenge to creating these materials and advancing fibrolamellar research. One critical way patients can help overcome this challenge is by donating tumor tissue to the Fibrolamellar Cancer Foundation Biobank through our Tumor Donation Program.
What is the Biobank?
The Fibrolamellar Cancer Foundation Biobank is a centralized repository of tumor tissue and blood samples contributed by fibrolamellar patients to help advance research. Our Biobank protects and preserves these samples and makes them available to qualified researchers interested in studying fibrolamellar. A single sample sent to our Biobank may be divided and shared among several different labs to support multiple research studies. Additionally, our Biobank collects clinical information from fibrolamellar patients to enable research into factors that affect treatment and outcomes.
In this video from the FCF’s September 17, 2020 Virtual Fall Gathering, Patty Cogswell discusses the FCF BioBank Program.
How to Contribute
If you have upcoming surgery, contact us at (203) 340-7805 or pcogswell@fibrofoundation.org as far in advance of your surgery as possible. Our Repository Manager, Patty Cogswell, will discuss the process of donating tumor tissue with you and answer any questions you have. Once you sign papers giving us your permission to do so, we will contact your surgeon and make all the arrangements to collect tissue remaining from your procedure that is not needed for your care.
Tell your surgeon that you want to donate your tumor tissue through the Fibrolamellar Cancer Foundation Tumor Donation Program. Your surgeon can help by encouraging the hospital staff to work with our research team to make sure your tissue is saved and can be used for research.
If you had surgery in the past, tissue from a previous surgery might be stored at the hospital where you were treated. Let us know when and where you had surgery, and we will attempt to locate and obtain this tissue and add it to our Biobank.
If you have ascites fluid that is being drained, know that ascites fluid is a valuable resource of fibrolamellar cancer cells. Please let us know if you have an upcoming ascites fluid draining and we will attempt to collect this fluid to add to our biobank and create disease models of fibrolamellar cancer.
Participating Hospitals
Each fibrolamellar tumor is valuable for research, so we will make every effort to collect tissue from any hospital in the United States. However, please be aware that there are some hospitals and situations in which it will not be possible for us to obtain tissue. Currently, participation in our tissue donation program is only possible for patients who have surgery in the United States.
Frequently Asked Questions
- Does it matter when I contact the Fibrolamellar Cancer Foundation? Yes. The sooner you contact us, the more likely it is that we can obtain your tissue. If you contact us before surgery, we can work with your hospital to ensure that your tissue is saved and sent to us in the correct way. Otherwise, your tissue may not be useable for fibrolamellar research.
- Will donating my tissue affect my care? No. Your safety and health always come first. No additional tissue will be removed surgically as a result of your participation in our Tumor Donation Program. Only tissue not needed for diagnosis or care (tissue which would otherwise be discarded) will be donated to us.
- How is my privacy protected? Your privacy is very important to us. To protect your privacy, each tissue sample sent to our Biobank is labeled with a unique identification number and any personal information is removed. Researchers only see these identification numbers so they never know the identity of the patients whose samples they receive.
- Can I find out the results of research performed on materials created from my tissue? No. The overall results of ongoing fibrolamellar research are published regularly and some results are available on our website, however, it is not possible to share with an individual patient the results of research performed on materials that used their tumor tissue.
- Will I benefit from contributing through the Tumor Donation Program? Research conducted with your information and specimens will likely not help you directly, but it may help fibrolamellar patients in the future. For example, the research done on tissue in our Biobank could result in the discovery and development of new drugs, tests, or other commercial products that advance the field of fibrolamellar treatment for all fibrolamellar patients. Patients who contribute tissue through the Tumor Donation Program will not be given any compensation for such discoveries or commercial products.
If you have further questions contact Patty Cogswell at pcogswell@fibrofoundation.org. To download a brief overview of the program click here (for an english version) or click here (para una versión en español).